A Child's Heart

A Child's Heart:

A pregnancy and a birth is a magical experience for any mother.

When Caitlin and Rachel introduced their beautiful baby boy Beau to the world, everything was perfect...
Except unbeknown to them was a little secret "Beau's Heart"

When little Beau was just a few weeks old he began having difficulties with his breathing which was later diagnosed as Bicuspid Aortic Value.

One of Beau's mother's (Caitlin) kindly agreed to an interview with me so as to help raise awareness of Beau's condition.

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The Interview:

What is your name and age?
My name is Caitlin and I'm 52.

What is your wife's name and age?
My wife's name is Rachel and she is 28.

What is your son's name and age?
Rachel gave birth to our son Beau who is now 15 weeks old.

Did Rachel have a normal pregnancy or were there any complications?
It was a normal pregnancy, no complications.

Did Rachel have a normal labour or were there any complications?
Labour was natural delivery at 40 weeks and 2 days, Rachel had just gas and air plus some help from the kiwi device.

What did Beau weigh at birth?
Beau weighed 7pounds 4oz at birth.

Please explain in full detail the issues which made you aware of Beau's problems with his heart:
Beau was absolutely fine until he was 5 weeks 3 days old. Rachel went to put him in the high chair to go out and noticed his lips and tongue were blue his eyes were glazed he was very hot and clammy his breathing was very fast he was really responding so we called ambulance.

Beau was taken to Derby Hospital by ambulance, how was his condition treated?
Derby A&E thought he had some kind of chest infection he came back round with oxygen.
He was moved to dolphin ward and they came to scan his heart and found he had coarctation of the aorta and fluid around his heart.

Due to a second episode of Beau struggling to breath he was transfered to PICU at Glenfield Hospital, how was his condition treated there?
From Derby he was blue lighted by ambulance with a doctor and a nurse to Glenfield where they took him straight in to have the fluid drained from around his heart.
He was in intensive care and had the arch widened 2 days later.
4 days later he moved to ward 30 the paediatric heart ward.
He was discharged 2 days later.

What was Beau diagnosed with?
He was diagnosed with bicuspid aortic valve.
Moderate to severe aortic valvular stenosis.
Coarctation of and hypoplastic aortic arch impaired ventricular function. Previous pericardial effusion.

Is the condition hereditary?
No its not hereditary although there are a lot of heart problems in the family.
He had pericardial effusion on 20th april and coarctation repair with end to end anastomosis, pda ligation via left thoracotomy on 22nd April.

How was the diagnosis made?
He was diagnosed by echocardiogram

What surgery has Beau undergone?
Will Beau need more surgery?
He currently has narrowing of aorta so requires a balloon angioplasty  soon this is provisionally booked for 12th july
Beau is on medication for his condition, we have to monitor his breathing closely, he is currently unwell with a tummy bug which we have to get him checked at doctors or hospital in case it puts any added pressure on his heart.
He also needs increased calories so is prescribed sma high energy as he burns the calories quicker than a healthy baby of his age.

What is Beau's prognosis for the future?
Prognosis is good but he will need regular reviews and follow ups by Glenfield regular echo scans he may need further intervention as he gets bigger.

What support was available to you and your family?
We have had a lot of support from Glenfield ward 30 and the cardiac liason nurses in outpatients.
Also his GP Dr Pollock has been brilliant and health visitor Emma.

What advice would you give other parents/guardians in a similar situation?
I would give the advice of although it's a horrendous thing to see your child unwell the wonders of modern science and technologies means they can do so much now to help tiny babies.
Babies are so much more resilient than u think.
You are not alone.

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Help & Support:

http://bicuspidfoundation.com/whohasbav.htm

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Beau's GoFundMe Page:

https://www.gofundme.com/2r968gr6